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RDS - Rare Dementia Support Canada - Advice, Community, Learning

RDS Canada Team

Mary Pat Sullivan, PhD, MSW, BSW, RSW

Rare Dementia Support Canada Lead

I am a registered social worker and Professor of Social Gerontology and Social Work at Nipissing University. After many years as a social worker in geriatric mental health in northern and eastern Ontario, I completed a PhD in Gerontology at King’s College London (UK). My academic and research career in the UK and Canada focuses on the social context of aging and older age, including people’s experiences of living with dementia. My mother was diagnosed with young onset dementia when she was in her early 50’s. My family’s experience providing support and care over the years has influenced my own learning on how families “do family” whilst navigating multiple support and care transitions.  

If you would like more information on my academic and research work, please see here.

Jen Gordon, MSW, RSW

RDS Canada Support Manager

With roots stretching between Thunder Bay and Ottawa, I have lived in Northern Ontario for most of my adult life. I am a registered social worker and teach part time in the Bachelor of Social Work at Nipissing University. I have studied at both Lakehead and Laurentian University and came to RDS Canada from outpatient mental health services at the North Bay Regional Health Centre. In my professional career I have focused my work on the intersections between physical and mental health and wellbeing including grief and loss in the face of neurological changes. I have been working with groups since the early 1990’s and enjoy the connection and growth that happens within the group process. My own life experience, as a parent to an adult child with a brain injury, contributes to my understanding of how families can hold both pain and joy as they walk the path of life together. I look forward to meeting all those who connect with RDS Canada individual, family and group supports.

Dorothy Larkman, MSW, BSW, RSW

RDS Canada Oshkabaywis*

Anishinaabe que from the Matachewan First Nation, mother of three, grandmother of five, sister and auntie. I completed an undergraduate and graduate degree in social work focusing on Indigenous ways of helping. Currently, I am working on my PhD with the University of Waterloo researching relationship building between Indigenous and non-Indigenous peoples highlighting the Indigenous ethic of non-interference. As I teach in the School of Social Work, I can be involved with my home community while reaching out to other Indigenous peoples in their search for equity, social justice and balance. 

*In the Ojibway tradition, Oshkabaywis is a (spiritual) helper. “In the Ojibway tradition, there were Seven Grandfathers who were responsible to watch over the people. They were powerful spirits who sent an Oshkabaywis (helper) to walk among the people and find a person to teach them how to walk in harmony on the earth. A little boy was found, and he was gifted with a bundle which would provide the people with the foundation to live and thrive in harmony with each other and with the earth. At each stopping place on the Little Boy’s journey, there were megis shells on the ground and the meaning of each gift was explained” (Charles, 2013, p.1).

Jeff Thornborrow, MSW, BSW, RSW

Faculty Collaborator

In 2000, I began working at a youth mental health treatment facility. Since that time, my 20-year professional career includes child and youth mental health (CYMH), child protection, youth criminal justice, and the developmental sector.  I am a Registered Social Worker and an Assistant Professor in the School of Social Work at Nipissing University. I am working towards my PhD with a research focus of emotional connections made between teachers and kindergarten students. Particularly, I am interested in hearing from children and how to help them in having their voices valued in expressing their needs. RDS Canada recognizes that working with people experiencing rare and young onset dementia also means working with their families, including children. I am excited to continue my work in valuing children’s voices as part of the RDS Canada team. 

Veronika Williams, PhD, BSc, RN

Faculty Collaborator

I am a Registered Nurse and Associate Professor in the School of Nursing at Nipissing University. I completed my BSc in Nursing in the UK and initially worked in respiratory and general medicine, before continuing my academic career and completing a PhD at the University of Southampton, UK. Since then, I have worked as a researcher on several research projects in the area of ageing, digital health and respiratory conditions. My research focuses on understanding the experiences of people living with long-term conditions, particularly in the context of ageing, and how we can provide better support for people living with such conditions and their families. I was previously Director of DPhil Evidence-Based Health Care program at the University of Oxford, UK and decided on a northern Ontario adventure joining Nipissing University in 2019. 

If you would like more information on my academic and research work, please see here.

Lakshita Konwar, BSc

Direct Support Team Administrator

I graduated from Nipissing University with an Honours Specialization in Biology and a certificate in Neuroscience. For my undergraduate thesis project, I conducted a literature review examining glutathione depletion in neurodegenerative diseases. Throughout my undergraduate degree, I was able to garner meaningful experiences through my work with children, students, and older adults. My professional and personal experiences have rooted my passion in building deeper connections with individuals I support and, through my conversations with RDS Canada members, I have understood the importance of resources, support, and awareness within the field of rare diseases. I am grateful that I get to work within an organization where I learn something new each day.

Hana Ryan, BSc

Research Assistant

I earned my Bachelor of Science with Honours in Psychology from Dalhousie University in Halifax, Nova Scotia. My academic experience allowed me to gain valuable research experience in the realm of behavioural medicine and chronic diseases. In my professional experience, I worked alongside a public health initiative for Nova Scotia Health where we focused on improving access and quality of care for Nova Scotians. Through both research and professional experience, I’ve cultivated an interest in public health research and care. I am excited to have the opportunity to work with a multi-disciplinary team of healthcare professionals and researchers at RDS Canada. I am even more grateful for the opportunity to explore ways of supporting individuals affected by rare and young-onset dementia through my work at RDS Canada.

RDS Canada Students

Avery Duguay, 4th year BScN

Ashley Boucher, 4th year BSW

Callum Nightingale, 4th year BCOM

RDS Canada Advisory Circle

Our Advisory Circle oversees the development, delivery and evaluation of RDS Canada’s programs and services. Our current members include:

Mary Jago: Mary is a care partner for her husband who is living with young onset Alzheimer’s disease in Sudbury, ON.

Paul Lea: Paul is living with young onset vascular dementia in Toronto, ON.

John McCaffery: John is living with young onset frontotemporal dementia in Calgary, Alberta.

Phyllis Montgomery: Phyllis is a Professor in the School of Nursing at Laurentian University, Sudbury, ON.

Myrna Norman: Myrna is living with young onset frontotemporal dementia in Maple Ridge, BC.

Stephanie Ruckstuhl: Stephanie is a care partner for her husband who lives with young onset Lewy Body dementia, she is an Instructor at New Brunswick Community College in St. Andrews, NB, and sits on the Editorial Advisory Board for Live Well-Dementia Connections Magazine.

Vicky Willis: Former care partner and facilitator with the Lived Experience Network for Southeast Ontario.

Trisha Wilson: Trisha is a social worker and Performance Improvement Lead, St Joseph’s Care Group, Thunder Bay, ON.